Post Transplant x

[Kidneykel]

Hi, I'm looking to connect with people who are post transplant and to see how you are feeling, I am 2 weeks post transplant and it would be great to speak to people who have also been on this roller coaster ride 😁 I look forward to hopefully hearing from you x Kelly x

[Hidden]

I’m almost a year in now it’s not as easy say you would be led to believe but it’s definitely worth it in the long run my problem is I got diabetes from the steroids kinda put a spanner in the works for me but I’m managing it fairly well it’s way better than dialysis just do what your doc says you be fine

[6V53]

I'm about 18 months post transplant. I feel better than I have in decades. I have also developed diabetes. I have also had bouts of CMV. So, life didn't suddenly turn into what "normal" people have. I still see Dr's all the time and take tons of meds. The hospital staff know on a first name basis. So I still live a very medical life.

However, I can play with my kids, snowboard, work honey do's, and be productive at work. All things that had been difficult or impossible before.

I am still hesitant to go back to 40 hours a week, mainly because of the appointments would eat up all my leave time. I still take vacations to go to the big city for appointments. I can't imagine a vacation for fun.

So, overall I am very happy with my transplant and my new life. But it isn't normal by a long shot.

Alex

[Kidneykel in reply to 6V53]

Hi thanks so much for your reply, it's great hearing you can still live a good life and enjoy time with your kids.

I'm in the really early stages so adjusting to all the new medications and have experienced some real lows due to the steroids....who knew road rage is a real thing 🤣 I have a reduction chart which starts soon so joking that will help. I've also had some issues with fluid so have gained a great deal of weight in a short time but I know it takes time to get these things sorted so just need patience 😁 thanks again for getting in touch, it's hope you are doing well Kelly x

[wonderingjen]

Hello Kidneykel - Congrats on your transplant! I'm 28 years post transplant. I've had ups and downs but overall have done well. Take your meds religiously. And, you might want to learn about eating a plant-based diet. Though it's not for everyone, I think there is some research that suggests eating mostly plant-based can preserve the kidney. Regardless, wishing you many healthy years with your new kidney!

[Kidneykel in reply to wonderingjen]

Hi, thank you so much for your reply and 28 years!!! That's amazing 😍😍 that makes it all seem worth it!! I will definitely look into more of a plant based diet, at the moment I'm enjoying the things that was not aloud to eat, just for a brief period and then I'll be good again 😁 I hope you are still doing well Kelly xx

[modernmusic]

JUst celebrated my first aniversary of transplant life and I can truly say that did feel like celebrating! In truth, it has not been without some difficulties, but all in all I would say than it's better than I expected, but not as good as I hoped. I had been in ESRD for 10 straight years before the transplant without ever going on dialysis, so I'm quite familiar with watching my labs and adjusting my diet in response to the most recent blood work so that has'nt bee difficult. I would say that the most difficult thing has been getting used to having a severely compromised immune system.

[Kidneykel in reply to modernmusic]

Hi, thank you for replying and I'm sorry to hear you have had such a tough time 😔 nobody explained to me how I would feel after and have found it a bit of a struggle if I'm honest. I've had some complications which have included extra procedures under local anesthesia and sometimes not so feel I was not prepared for any of these things, it was almost sold as new kidneyband you'll have a brand new life, I'm so grateful but wish to god I had known more about how I would have felt with the meds etc, I've been so meam at times which then makes me feel guilty but I'm extremely luckybto have an understanding mum and partner, j would be truly lost without them at the moment. I hope you're OK and will be on and off here if you need a chat Kelly xx

[WYOAnne NKF Ambassador]

Hi....I had my transplant in 1999,,,ya, 24 years ago!

What I remember most was that first year. I had a lot of problems with GI issues.

My best advice to you...is to report any problems to your transplant doctors! They can't help if they don't' know what is going on with you!

Dose of my meds were reduced but it wasn't till a pharmacist figured it out that my generic version of my immunosuppressants were causing all of my issues. Once I started name brands all turned around for me. To this day I continue to take name brand of my meds.

I have had a wonderful life and continue to do so. Saw my daughters marry! I now have 2 buddies my grandsons. We travel! I had a great career helping seniors get the needed services they needed in Milwaukee. When I retired a few years back we moved to our beloved Rockies in Wyoming.

I continue trying to give back for my fantastic GIFT that I received. I was blessed with a kidney from a deceased donor that was only 16. He is my HERO - Ryan.

I continue to LIVE my LIFE! I am a volunteer and public speaker telling my story with my local Donor Alliance WY/CO.

Best of luck to you!

[Kidneykel in reply to WYOAnne]

Thank you so much for your reply and what a lovely story 😁 I'm so glad I joined this forum, on days when rhings seem a bit dark these lovely messages are a real comfort that things will get better so thank you 😁 xxx

[Blue-Quilter]

I'm so grateful that I am still alive, thanks to the transplant I received 4.5 years ago. I was told transplant was a treatment, and likely the best option for ESRD, but I thought it was going to be more of a cure. I've had many complications and been rehospitalized 6 times, averaging 3 days each time. I've had more labs and med adjustments than I believed was possible, and more infections than I want to count. However, with each incident, I have learned a new thing to watch for and I'm stronger and healthier now than I've been in 40 years! It definitely isn't the journey I thought it would be, but given the options (dialysis, death, or transplant), I'd take transplant in a heartbeat again!

Listen to your team. Ask a ton of questions, which I wrote in a notebook, one per page to leave room for the answer. Take your meds religiously on time! And make plans to check off your Bucket List items. Live your best life and thank your donor or their family. You were given a gift. Enjoy it.

[Kidneykel in reply to Blue-Quilter]

Thank you so much for your lovely reply, it really is an absolute gift and it's really great to hear positive outcomes, I'm knly at the start of my post transplant journey so have had some good days and some bad days, i feel fantastic in my self in comparison to how j did feel, there has just been a few complications so those days feel heavy but then i remember it's still early days and I'm extremely lucky 😊 Kelly xxx

[littlelinda50]

I will be 5 years this May and it is so mind blowing to type that! I actually did very good kidney wise after my transplant. They said right after they my donor kidney was in placed and unclamped I start producing urine. I had other issues like I had Addison disease and they didn't pay attention took them 2 months to diagnose me when I had the signs the right after I came out of surgery. If you have Addisons your look very tan and my sister and kids all kept saying how tan I looked plus my bp kept dropping. That su ked to go 2 months with my bp constantly dropping. I was in an out of the hospital for those 2 months. I also was not healing on the inside on my incision which was from my sternum to pubic hair line and that took a year to get them to finally check it out I had over 12 hernias that had to be repaired. I also had constant UTIs but finally went to a urologist and been fine for 3 years now. I had my gallbladder removed which was not a bad surgery. I still need a surgery to remove my hanging stomach that is pulling on the mesh and incision but other than that I am doing good. I even had covid and was fine. If you have any questions feel free to ask away and I will do my best to answer them. My best advice is don't forget to enjoy life! The whole reason for a transplant is to enjoy life so do things you enjoy and love to do!

[Kidneykel in reply to littlelinda50]

Thank you so much for your reply! I too seem to be having issues with my wound, I have lots of fluid build up and had a drain fitted Friday which could only stay in a few days and 6 litres came off of that, now they have taken it out and i may need a marsupial surwgeybif I continue to swell....its all fun and games 😁 dodgy you struggle with the fluid? Have they managed to repair all of your hernias for you, 12...that's a lot!! Do you know why you got these? I hope you're still doing well Kelly xx

[littlelinda50 in reply to Kidneykel]

I hope they get your swelling undercontrol. That was a lot of fluid they removed. I did not have any extra fluid or swelling. As far as my hernias go they developed because of the anti rejection medication sirolimus. This medication is known to not allow your body to heal. I actually started complaining about soreness along my incision about 3 months after my transplant but no one would order a scan to see what was going on. After a year of complaining and me finally going to my PCP showing her the hernia that had popped out and all the sore places she got the ball rolling to get me checked out. After I got scanned they seen all the hernias but it was not until I had the repair surgery did they realize how many I had. My suggestion for your issue is to ask questions on why this is happening and what to do to help stop it. Do research yourself online but remember that everything you read online is not always good. Check to see if any of your medication could be causing this BUT DO NOT STOP THEM!!!!! If you find out a medication can cause this start talking to your doctors about what to do. Sometimes to things happen and it's nothing we did or didn't do. Good luck and big hugs!

[littlelinda50 in reply to littlelinda50]

After I was put on prednisone I gained weight and then lost weight which was not easy. So I have a hanging stomach which I did have a fluid pouch and had it drained twice. I need to have my hanging stomach removed and that will get rid of the area that keeps filling with fluid. So yes I have a similar issue.

[Bax509]

Hi there! Congratulations on your transplant. It was definitely a roller coaster ride for me emotionally and physically - certainly in the first few months. I was transplanted via live donor 6/14/21. It was a great match but I had a small amount of rejection which they treated in part with large doses of prednisone. That affected me enormously. So the pred and the surgery recovery (which took longer than I thought it would) occasionally made me question my decision 😐. However - that resolved and my life and outlook are 100% better. Meds take a while to get used to and (for me) there are continuing side effects. I'm sure before transplant I had some magical thinking about how nothing would be wrong again after transplant but that's not how life works...The tradeoff is undoubtedly in favor of transplant for me. I hope you are doing well and have lots of support. Don't be afraid to ask for help and understanding as you navigate your new life. 💓

[Kidneykel in reply to Bax509]

Hi 😁 thank you so much for replying , it really is nice being able to connect with fellow new kidneys, I've had a real down day today just due to meds etc i think and you do feel extremely alone, even though I have great support, it's hard to explain why you can't stop getting angry or emotional and then realise....oh its probably the steroids 🤣 I'm normally a really happy person 😊 how long were you waiting for a kidney? I too have felt today what was the point, but again I know that will pass and then I brightened up, its just early days and navigating a new life. I hope you're still doing well and thanks again for getting in touch Kelly xxx

[Bax509 in reply to Kidneykel]

Those down days...whew. Yeah - and the pressure to constantly be happy because you received this unbelievable gift (I'm sure part of the pressure came from myself). The emotional/physical transition was not really discussed pre-transplant in my situation. I kind of understand why - there is a lot of information to impart and it's overwhelming all by itself. And of course there's the fact that all of us are different and there may be too many variables to try to prepare all patients for the immediate aftermath of transplant. Still - I wish I had known. It would have made it easier to understand that it can be tough for some people. Just remember, you can feel two things (or more!) at once and that it's normal to feel up, down and in between - and when that's enhanced by steroids - Katy Bar the Door (ancient phrase 😉)!

To answer your other question - I was listed in May 2019. Received 2 years later.

[Hidden in reply to Bax509]

Exactly when your on dialysis the nurses and doctors all keep telling you you be a new man again get you to thinking your going to be like you were when you were 18 which is wrong they should explain to you that it's not a cure just a lesser form of problems the drugs after transplant are horrible

[ShyeLoverDoctor]

Congratulations!!!

Now comes the hard part. I thought the hard part was getting through the surgery and emerging healthy, and thought once my cadaver kidney started working after only one week post dialysis, I was home free! Average 2-3 weeks for cadaver kidney to wake up, could even take 5 weeks. (If you got a living donor is different. I had three living donors fail the tests. I tried like heck to find a living donor)

Having a transplant is like getting a whole new medical condition.

Your drug dosages will be changing constantly, sometimes two or even three times a week. Pay very very close attention. Follow what they tell you, it may not be what’s on the prescription bottle.

Sadly, having to be re-hospitalized is common. I was sure it wouldn’t happen to me, but it did. I was released on a Thursday, felt great, then Monday, back again for four days for a life-threatening rare complication and they almost had to remove my colon!!! Hospitalized again at just past 4 months, and at 6 months or so, and again a week later. Many ER visits.

They gave me a page of what constitutes an emergency. Pay close attention to it. Call them if anything seems wrong.

Weigh yourself. Take your blood pressure.

Don’t take anything without talking to your doctors. Nothing. Not a vitamin, an allergy pill, nothing.

Your immune system is lowest for the first three months. Wear a mask! Avoid large crowds. Stay away from sick people who are coughing or sniffling. Do not travel, usually they say wait 6 months or a year. If you have any signs of sickness, let them know immediately.

Remember being immunosuppressed puts you at higher risk of certain cancers. I take cyclosporine that makes me prone to melanoma - not sure about tacrolimus - so I do my best to make sure I stay out of the sun, wear long sleeves etc. I got a melanoma 6 months post transplant. However, I had already had three melanomas pre-transplant so it wasn’t a big surprise.

Please, please make sure your caregiver knows they are appreciated.

Before you read the rest of this: I want to tell you, I’ve had a really rough time of it. No, it’s not super easy, but my transplant coordinator told me most people do better than I have and she’s sorry for what I’ve gone through, it is not typical. Yes, everyone’s recovery is different.

I’ll be honest- after about a month I regretted having the transplant and wish I had stayed on dialysis. I had a near fatal complication. I had a toxic reaction to one of the drugs and was just sick of it all. I was shocked when they said some patients do feel that way. I felt deeply depressed, and very angry that no one prepared me for how hard it would be. However after a couple weeks of that, that passed!!!

I”m at 8 months, 2 weeks, and I feel lousy quite honestly. It’s way way better than dialysis!!! But they just can’t get my blood pressure under control and put me on beta blockers that make me so tired I can’t enjoy my life, it stinks. I’m exhausted and it’s been that way for a couple months. I can’t exercise I’m too weak. They just put me on a diuretic and I think after five days it’s got me dehydrated and I’m calling my doctor Monday. It’s very very upsetting. There’s a limited number of blood pressure drugs they can try on me. I felt better the first month after transplant than this!!! It’s all I can do just to get dressed.

I’m feeling horribly horribly down about the weight gain. I don’t know what your prednisone dosing is like. I take 5 mg per day. ALL THREE of my doctors said a weight gain of 15 to 20 pounds post transplant is common the first year and to be expected. I do hope they warned you about that. Sure enough, I’ve gained 20 pounds at 8 months. My doctor suggested last week that I consider the gastric sleeve or ozempic. I gain a pound or two every single week. It’s not healthy. I’m really starting to despair about it. I hate having a gigantic belly. I hate getting too fat for all my clothes and giving them away. It’s awful. Yes, it’s better than dialysis. But it’s pretty scary. Of course I”m worried about getting diabetes.

[Kidneykel in reply to ShyeLoverDoctor]

Hi, I'm am so sorry to hear you have had such a rough time of it you poor thing 😪 you sound like you have really been through the mill!! I'm only 3 weeks post and it's not been without its complications so far, I've had to have a few extra procedures, I dread my clinic 3 times a week as they always find something else they want to take out of me or stick in me but I know its part of the process....I just don't think I mentally prepared myself for how intense this would be and being a positive person, I always think everything will be fine and then when it's not and its out of my control it feels like another hurdle which I don't have the mental energy to climb. I'm sure it will get better and I am extremely grateful! How often are you having to go to the hospital etc now, ate ypu managing to live a normalise life? Kelly xxx

[ShyeLoverDoctor in reply to Kidneykel]

The last time I was in the hospital was first week of January. I was hoping to NOT go to the ER this year, but I went in February worried my kidney was failing (it was not). My BP got up to 204/100. Alarms started going off. No one came. I called my sister who was at a party and she and her husband showed up drunk. So much for her making important medical decisions for me. She told me I was fine.

I”m terrified of gettting covid— I might not die, but I could lose my transplant if it’s severe. So I wear a mask and stay in a lot, so I wouldn’t really call it a “normal life.”

I am in theory supposed to only get my blood drawn every other week now, yay!!!! But sometimes I still go in every week.

I see my nephrologist here once a month, and I see a nephrologist from my transplant center once a month too, see my cardilogist once a month.

They simply cannot get my blood pressure under control, even putting me on a beta blocker which I hate and makes me so tired it ruins my life. I can’t exercise anymore I am so tired and I used to work out 3 x a week, post transplant!!! , before the beta blockers. I just thought I was anemic and my vitamin D was low (it dropped to only 14, should be 30, now it’ s up to 21) My blood pressure is still high but my pulse is 58-60. I have no vitality. I don’t go anywhere. I wake up exhausted. My body feels horrible, like it was crushed by a steamroller.

They just (Friday) put me on a diuretic in addition to a beta blocker and I am terrified it will damage my kidney. Pretty sure I’m going to insist stop taking it. I’m getting a CMP tomorrow. Before I was on dialysis, my creatinine was 1.7 and they put me on a diuretic and it was up to 4.4 in only 10 days. My doctors didn’t even NOTICE. I saw the bloodwork online and called them. No apology from them.

No, I am not living a normal life. I’m obsesssed with my bloodwork. I go to a transplant support zoom and that is my favorite hour of the entire week. If I wasn’t on this beta blocker which is hijacking all of my energy, my life would be much much closer to normal. You can’t suddenly stop a beta blocker but I’m going to be very aggressive with my doctor about it. I want off it. We went from 900 mg a day to 600 mg twice a day and it didn’t improve. Since I take cyclosporine I am limited in what drugs I can take for blood pressure. I hate it. Really, besides the covid precautions, without this fatigue, I’d say my life would be pretty normal, just getting blood tested every other week.

I see more of my doctors than I see of my friends.

By the way, March 30 is Doctor’s Day. I give card to all my doctors. You can’t find these cards in a store but you can order them online. I also give them cards on holidays. I have the cell number of my GI, my psychiatrist, and my dentist, and my hematologist will return my calls at the end of business day and talk to me without an appointment. I bring medical cartoons to all my appointments. In other words, I get my doctors to like me and treat me like I”m special.

Anyway….

[Ziggydoodah in reply to ShyeLoverDoctor]

Thank you do much for mentioning the weight gain. I'm on the transplant list and really value this information. When I was first diagnosed with CKD I was put on a REALLY high dose of steroids. The weight gain was horrific and I felt so toxic. I now have a total fear of them. I know i have to take them after the transplant but I thought 5mg would be a manageable amount regarding weight gain. So thanks for preparing me!! Never underestimate how much passing your knowledge on to other people can help them. All the best

[ShyeLoverDoctor in reply to Ziggydoodah]

You have two choices. If you have a closely matched sibling willing and healthy enough to be a living donor, go to UCLA for transplant. They have a program that will give you your siblings stem cells and you will never need any rejection drugs for life. A sibling has a 1 in 4 chance of being a perfect match. I will never be able to forgive my sister as long as I live for quitting the testing process halfway through and leaving me on dialysis.

You can get a transplant at a center that does not use steroids because they feel the risks of weight gain and diabetes is greater than the benefits. However every single study I read says chances of rejection are higher without it. Or they have a steroid sparing program where you are tapered off them quickly. Scripps does that, in La Jolla , CA.

Your body your choice.

[LeslieK]

Hi. I’m almost 11 months post transplant. My sister was my living donor. I’m 42 and had ESRD due to preeclampsia. Feel free to reach out with questions on my experience. Definitely worth the major surgery that’s mind boggling. Everyone is different and this forum will provide support and insight to your new kidney. Immediately following transplant when I started the anti-rejection meds, I did have nausea, loss of appetite, insomnia, and a tingly nerve type of feeling as my body got used to the medication Tacro and Myfortic. You will adjust to it give it a few months in my experience. Healing and meds go hand in hand for you right now as it was so recent.

[ShyeLoverDoctor in reply to LeslieK]

I’ve got all the side effects handled except the darn high blood pressure, thankfully.

[wheezoids21]

Congrats! I am almost 8 months post transplant and doing well. The first 2 months were miserable, with severe pain and uti's. Dealing with cmv at the moment as it was a D+R- kidney, but all in all it has been not bad at all. Creatinine is stable at .8 to .9 and no serious problems that havent been easy to manage. I am blessed.

[Jamok]

Hi Kelly! Congratulations on your transplant! I just celebrated my one year anniversary on March 13th so we are about a year apart in our journey. The advice I got from many was that at the one year mark your body starts to adjust and you settle into your new normal. I would say this is starting to feel mostly true for me. It’s been an interesting year though.

Surgery left me sore and fatigued for a good three to four months but that’s to be expected. I was weaned off of pred in the first week and was taking Envarsus and Myfortic. Within a week of my surgery, I started having G.I. issues. Not really bathroom issues, but intermittent severe cramping and signs of GI irritation. After six months, my transplant team took me off of myfortic and started me on Sirolimus. This helped quite a bit with the cut glass cramping! I still do get IBS episodes of mild cramps that last a few days but it is nothing like what was happening with the myfortic. My transplant center recently put the prophylactic antibiotic on hold to see if that helps. I’ve also dealt with mouth ulcers/canker sores but after doing my own research and also getting advice from this group, my PCP finally prescribed a steroid paste that has helped tremendously with this. My blood work has taken 9 months to stabilize except for a lower white blood cell count which started around the six month mark right after I received my last Covid booster. I asked the nephrologist if a vaccine could be the culprit for the sudden drop and she thought it could be. They didn’t seem concerned telling me it was most likely my immunosuppressants keeping it low but at the one year transplant appointment did some additional tests to rule out other causes such as ptld lymphomas/ Epstein barre virus. I did read that Bactrim can cause neutropenia so hoping that being off of it a few weeks will help with that. Overall, I’m getting stronger and feeling healthier every day. The old me, prior to CKD has been gone for a while, and I feel like by (slowly)accepting my new normal and trying to focus on gratitude for life it has helped me to find joy even during the challenges. It also helps to be proactive when you’re having issues and if you’re not getting answers keep knocking on doors until you do. Do your own research, consult with other patients, this group is amazing for that. Exercise, eat safe and mostly healthy food, drink water and get good sleep. Avoid infection by wearing a mask when you must and always wash your hands/use sanitizer- avoid touching your mouth, nose and eyes. And take your meds as scheduled and wear sunscreen and sun block clothing. The NP at my Transplant Center said rejection and infection are the biggest concerns especially the first year; cancer is also a threat, so keep up on screenings/prevention.

My mom always told me “ You must do the things that you must do and God helps you.”

Take care,

J

[clevebro]

Congratulations on your transplant and I hope things are going well for you. I am 8 months post transplant and it has certainly been a ride. Feel free to to me